The problem I am finding which most of you do as well is getting people to believe you.

Think of how many people you tell this to and they say, no way. Or that they know people who’ve done it and they are fine so it can’t be true. Pain is a funny thing. Convincing someone of pain, it’s really tough. just look at us trying to convince doctors of being pain. Or convincing a lawyer to sue over being in pain! It just doesn’t happen.

I think things need to happen to stop this OR for there to be REAL NUMBERS. A real study of PVPS. Real answers. Cause the shit we have now is getting old.

I know what you mean. My wife is planning a trip to Disney without me cause I can’t walk/stand that long either. She joked to get me a scooter and laughed. But that kind of shit hurts. It’s bullshit that I have to deal with pain and then, deal with her lack of caring or concern.

The pain was so bad on Saturday after have 4 soccer games for my kids I was throwing up. The wife, didn’t care and ended up throwing a fit and literally throwing shit around the house.

I understand the feeling. I told my wife I wasn’t sure I wanted to go and for a day she considered going without me. Even that bothered me a little bit but she changed her mind and said she wants me there even if I sit on the curb all day.

I’m not siding with your wife but try to see things from her perspective. This crap gets old…for everyone. She wants you back and probably even feels guilt and responsibility for your issues. However, you live it while she tries to live on and make a normal life out of a difficult situation.

No one understands your pain better than the group on this site. Just try the understand the other perspective. They walk on eggshells all day every day not knowing how we’re feeling day to day. That’s a very difficult position for a spouse to be put in. Love her as much as you can. You need it as does she.

I have had a lot of success in regards to convincing men not to do it. I know 6 men that were going to have a vas, 3 who were scheduled, who have decided to not have it done. How? I’ve missed 7 weeks of work, which never happened before. I’ve been out with friends visibly shaking in pain. I also have openly discussed my issues with everyone I can in the hopes that i can find someone who’s had similar issues. That being said, I’m not actively convincing them, more so that I’m trying to inform them of the serious risks. However, most men will end up fine and birth control and family planning are incredibly personal decisions so i haven’t swayed everyone I’ve talked too. I’m not even convinced anyone would have changed my mind because I did not want another colic baby.

HA! My wife feel guilt? My wife has never felt guilt a single second in her life. Ever! For anything!

Today she said we are going to go look at colleges and one of them has hiking and caves and stuff nearby. She said to the little kids we’d go hiking. Except for me.

She doesn’t give a shit about me. I was throwing up cause of pain last Saturday and she screamed at me cause I had to leave cause of being sick. She was pissed I didn’t stay!

She’s totally happy using toys and watching porn but hasn’t touched me in ages. The hate is huge between us and the only reason I don’t leave is the kids. So it’s roommates for now. I’m tired of it but what do you do?

Same mine has no guilt. In Australia and around the world i would like to see vasectomy stopped but sadly it wont happen. Just google search and everything that comes up shows how healthy people are with vasectomy smiling families, they have the internet all wrapped up how good it is. Just like smoking advertisments were years ago all fake.

I have saved 2 people from vasectomy here in Australia in the last 2 months. I know its not much but i am doing my bit spreading the word. I told them my story and they immediately cancelled procedure.

The National Board of Health states that Post Vasectomy Pain Syndrome (PVPS) is defined as
At least 3 months of chronic or intermittent pain in the scrotum that may occur after
male sterilization. It is estimated that up to 15% of sterilized men developthe condition, and 1-2 percent of the patients develop pain in the scrotum, which is so severe,that the pain affects the quality of life.
The background for the condition is not uniquely known, but there are a number of
different theories. Nor are there neither national nor internationally commonprocedures for investigating the condition and also no effective treatment. The conditionis difficult to treat. Most often, male sterilization is done without complications
and is an easy and effective contraception in men.
Like other chronic pain conditions, PVPS can be a challenging problem
To solve this clinical practice, and it can be a frustrating process for both patients
and clinicians. Many patients will end up seeking medical care in different
disciplinary disciplines.

I’m good with Mike’s letter so administratively what is the next step? I’d be happy to create and host a website for the mission. We need to come up with who will be doing what. Also, mailing requires some minor financial backing. Foundation paperwork?

While it would be ideal to create a PVPS foundation (Pudendal hope is a registered charity/foundation and so is post-finasteride syndrome foundation) it’s going to require some organization and we’d have to apply for non-profit, charitable status.

It’s certainly not impossible, and I’d be happy to start it with some members here, but I think it would be ideal for this foundation to be in the U.S. (bigger population, more PVPS victims, more awareness etc) vs being started in Canada.

Ideally, in my opinion, the best way to get started without all of the legal wrangling, charitable paperwork, non-profit status hoopla would be for a bunch of us to form an advocacy/awareness group. I see there are a lot of guys here with IT and web hosting backgrounds. That puts at a big advantage.

An advocacy group should have a mission statement, and our website must have a FAQ section about PVPS, make reference to ALL PVPS statistics from the AUA, CUA, NHS and include various research papers, and of course a little tidbit about “Why does my local vasectomist say 1 in 1000 or why haven’t I heard about this?”

Again, as an advocacy group, we don’t have to worry about tax issues, etc, and we can have a North American chapter and perhaps a UK chapter (a lot of UK PVPS guys here).

PVPS victims could contact the website with their informed consent documentation and we can notify the urologist/hospital/GP/guy with kitchen scissors about their bad outcome and include an information sheet about the true prevalence of PVPS. Although there are HIPAA requirements, we can always get around this by only using patient initials or only including date of surgery, something to that effect.

Another thing that an advocacy group can do is file a brief as an Amicus curiae https://en.wikipedia.org/wiki/Amicus_curiae basically an intervener in lawsuit to educate the Court with information in a potential PVPS lawsuit or medical board hearing. This is commonly done by advocacy groups in other matters and can really make an impact. We can do this too. It doesn’t mean we need a lawyer to do this.

I like this site and really appreciate what @Victor has done for us, but we need an organized webpage all about PVPS, with research papers, treatment, and a FAQ section. Prostatitis.org has an info section and homepage, so does pudendalhope, so does post finasteride foundation. We need this too.

I’d be happy to chip in with some other guys here and buy a domain name to start this. I don’t know much about web hosting and HTML, but it sounds like there are a lot of guys in here that do.

PM me if you’re interested - we need to bring more legitimacy and awareness to PVPS sufferers.

You will never be able to convince the authorities and urologists that sterilization should be banned or on a black list of dangerous operations. They are both part of the scandal and do not want to incriminate themselves. Of course, these men should be accountable, but we must get communicated facts in a sober and proper way to all those who are planning an operation.
I have spoken to the Danish authorities, who now recognize all the facts, but they do not intend to emphasize the danger of the operation against the urologists, saying that the legislation already ensures that urologists warn as they should (which of course is the greatest lie in world).

You will never be able to convince the authorities and urologists that sterilization should be banned or on a black list of dangerous operations.

Agh. I can’t stress this enough - I do not want vasectomies to be banned. For the majority of guys that get them done, they are happy with the decision and don’t even think about it again. Even a good deal of the 15%ers with mild troublesome pain don’t regret it and are happy with the decision.

Our focus really needs to be on the 2% who get their lives seriously fucked up by this supposed safe and simple procedure.

Plain and simple, our mission statement should be to require all providers to inform patients that 1 in 50 will go on to develop severe pain that impacts quality of life.

Our secondary objective should be to raise awareness and (possibly) funding for research into the causes and treatments for PVPS.

The funding portion would require a foundation/charitable status of course.

Again, I am not anti-vasectomy, I am pro informed consent. I believe that at least 50% of men would still go through with it, knowing the true risks of chronic pain, but a 50% reduction in procedures performed would put a huge dent in a vasectomist’s salary.

Yeah, I’m not against it either. Like many on here, I have often said that the only way I wasn’t getting the vasectomy is if God, the doctor or my self from the future physically stopped me. Every man I talked to that has had it done was happy with their decision, so I felt reassured. Plus, there are many reasons I man may want a vas, and it is up to them to make the decision and not be forced too.

As said above, any foundation should really focus on making the research/stats more public, fund future research, and most importantly provide information and assistance to men dealing with PVPS in a formal, scientific and medically backed way. This website is great but without the active participation of formal researchers and healthcare professionals it’s not the most effective way to provide assistance. I hope this make sense, but that’s the reality.

To that note, for a PVPS foundation to be effective, 1) you will need a lawyer to setup the appropriate paperwork and credentialing. I believe there are lawyers on this forum 2) You will need solid website design and support. I believe there are a few on here that could assist with that 3) You are going to need physicians that are versed in PVPS to assist with the foundation and be willing to attach their name to it. I’m betting this will be the most difficult part.

To that note, for a PVPS foundation to be effective, 1) you will need a lawyer to setup the appropriate paperwork and credentialing. I believe there are lawyers on this forum 2) You will need solid website design and support. I believe there are a few on here that could assist with that 3) You are going to need physicians that are versed in PVPS to assist with the foundation and be willing to attach their name to it. I’m betting this will be the most difficult part.

Steps 1 and 2 are simple for sure. Most any lawyers who do this kind of thing can get the paperwork done for us, it’s pretty straightforward, kind of like setting up a corporation.

Step 3, getting physicians on board - that will probably be our biggest hurdle. Perhaps Dr. P, Dr. Marks or Dr. Jarvi would be interested, but I understand that it’s ‘pissing in the wind’ and throwing your colleagues’ prized procedure under the bus, so they may not want to.

Again, if we focus on the 2% with severe pain and stress that ‘most men are happy with the procedure’ - which is true, we’d probably have a better time getting PVPS docs to join in. 1 in 50 is an acceptable risk to some, to others not so.

Unfortunately, for now, and I feel like a douchebag saying this, but the fringe side effects (whole body issues, autoimmune, primary progressive aphasia) should really stay out of the foundation’s scope, until more research is done. I hate saying that, and I’m sorry, but we only have a couple of research papers, which are very dated, whereas there are probably 100+ PVPS articles, not to mention various associations’ guidelines mentioning chronic pain.

Keep in mind, that if the foundation can raise funds, we can help commission further studies of PPA, autoimmune issues, etc. in the future.

The goal is to get informed consent where it is valid and mandatory. It starts with documenting outcomes and following up with medical boards and providers when things go wrong. Victor Ngyuen found the 1 in 1000 circular reference that I believe is the justification that allows that false number to exist. You have to challenge this stuff everywhere you see it. The best you can hope for is guys to know the odds when they go in. I didn’t have that luxery. I was sold on the “simple, safe, just cutting 2 little tubes, all the sperm is reabsorbed, man up, it’s time to take responsibility blah blah”. The sobering fact that even 1 in 50 will end up with life altering pain or pain that will negatively affect quality of life would have been all it takes. That is the most conservative number out there too.

Take care of the little details and the important stuff will fall into place. Mandatory informed consent is where it starts. Fear of lawsuits will force that issue, documenting bad outcomes and shoddy informed consent and taking names and letting people know you are taking names is how that happens.